Now Zane is sick and the cold I thought I beat came back. Ugh. He missed yesterday and this morning he woke up coughing like crazy again, so he is missing today again. I noticed that Zora just has a little bit of a dribbly nose too, so I think she is moving into the cold too. Thankfully, it seems to just be garden-variety cold and not something really serious, but it is still annoying.

I am wiped out, and I am behind on posting now. I have photos from a fun day yesterday at Pedalfest with my parents, but I still need to resize them. If I have any energy tonight, I will post them, if not, well, they will still be there later. lol

School went better today. I didn’t hear any negative comments. The kids seemed to be much less irritated about things today, and I even had a few kids coming to me and confirming what the teacher had said. (in a “hey, I listened, can you tell? kind of way) and had kids willing to let him in line easier.

I realized that the pattern to the meltdowns over the last week was that he went ballistic when he was the LAST person in line. Second to last, no problem, but the last person, big huge problem. So, I am making sure he isn’t the absolute last one now and the teacher is too. I think the “rule” formed from when we line up for lunch, in alphabetical order, which is the only time she designates positions, and he is second from the last.

There were a few people that came in for evaluations, the communications disorder classroom teacher and the OT. I think there might have been somebody else too, but I can’t remember right now.

I did find out the school has a room that is ‘in between’ the severe autism room (which, in this district, seems to be there for the most severe cases and nonverbal kids) and the mainstream room. There is a communication disorders classroom. From what little I could gleam, it seems like it might be a good fit for Zane too, not as much for the communication stuff in and of itself, but because she lets the kids work at the level they are at rather than the level their age suggests they should be at. For example, if Zane is at 2nd grade math, he will be able to do 2nd grade math instead of Kindergarten math in that classroom. (or, conversely, if he gets to 5th grade and is at a 1st grade writing level, that is where they work with him). I got the impression that it is a multi-age classroom too, but I don’t know if that is correct. The teacher was familiar with the specific visual prompts and how they are integrated into the classroom that Zane used in the preschool classroom and is familiar with the STs there too.

I told her that I didn’t know what would be best for Zane at this point, with this new information about the CD room, but I think that if he is in the mainstream classroom he will need an aide that understands how to manipulate the visual supports for him, but probably won’t need a lot of one-on-one prompts. A classroom aide familiar with the visuals, but who could also help some of the other students, would be appropriate if he remained. However, knowing that they might have a place for him where he could also work ahead without extra pull outs has some appeal too.

I also found out that the school district has decreed that they use Investigational Mathematics instead of Everyday Mathematics. (I asked after doing some research into the differing methods) In one way this is good for Zane because EM is much more language intensive, which isn’t good for him, but I don’t like the lack of mastery that IM method can produce The IM method is the spiral method…they cover a topic, but move to the next topic before mastering the first topic, therefore exposing kids to a lot more math and possibly allowing for better leaps and playing heavily into Zane’s ability to recognize patterns, but also giving the false sense of mastery when it isn’t actually there. It also can leave kids without the proper language of mathematics. (sum, difference, etc.) They mistake familiarity with understanding. She said that she, as many of the teachers do, supplement the Investigational methods to help keep some of the typical problems from occurring, so that encouraged me.

ST tonight went alright once we finally got started. M, his partner from the summer friendship group, was crying and Zane had a bad blowout that resulted in his session taking place in pull-ups while I washed his pants in the sink. Ugh. I have pants stashed everywhere for him, but forgot to replace the ones in the car stash. Yeah me. They skipped the hallway (less private area) part of the session today, but with all the excitement at the beginning anyway, there really wasn’t time. Zane was reluctant to put the wet shorts back on to go to the car, but thankfully he did it without too much drama.

How the heck did I go from being so completely lost to sounding like a teacher and ST and OT. lol. Very weird. I guess you can teach an old dog new tricks. lol.

Although most of the day was a bit smoother, we did have a major meltdown today coming in from lunch recess. He didn’t want to stand in line, I tried to move him to the back of the line instead of letting him randomly butt into line over and over, and he lost it. Totally. To the point that the principal, who was out helping the recess monitors came and walked with me as I carried him over to a quieter spot while the class went into the building. Then she walked with him around the building (with me following) and talked to him. (me following, and cluing her in on how to prompt yes/no after a question to help him respond when he is upset like that). We went to her office for a bit and got him a book, which helped him pull it back together while I cooled off. (I was dripping sweat from the heat and exertion).

Most of the rest of the day went pretty OK, not perfect, but not bad either.

During the day I started noticing a lot more comments about Zane from the classmates. Nothing mean spirited, but trying to be ‘helpful’ to other teachers (like the music teacher) by stating that Zane doesn’t listen, or the kid who tried to tell me that he didn’t know what the color green was when I was prompting him that his table (the green table) was told to get up and go to the rug when he was engrossed in an activity and not noticing the instructions from the teacher. Lots of little comments that made it clear that the other students were starting to wonder why Zane wasn’t getting in trouble for some of the minor things (looking forward, standing perfectly still, sitting without wiggling) that I was correcting him on, but he wasn’t getting “in trouble” for. The teacher and I talked about it and decided it might be a good time to clue the class in on some of what is going on, including that Zane isn’t “stupid”, as some of the kids were starting to say.

When I brought up the comments I was starting to hear, and that I was concerned because even though he might not get the comments now (although I think he is starting to notice a bit too at times), he was developing so rapidly, that it is very likely he will understand it very soon. It is a hard line to walk…my Mama Bear protectiveness doesn’t want anything bad said about my baby, but I think it was particularly bad because it wasn’t true, but he isn’t able to defend himself either. When I brought up the “stupid” comment she said, with surprise, that he was definitely not stupid, and, in fact, scored way above the other kids in the class on the letter recognition/phonics test that the kids were given. I knew he hadn’t done badly, but was surprised to learn he had not just done better than everyone in class, but did significantly better.

So we decided that it was time to have ‘the talk’, and that I would leave a little early while she talked to the class. We briefly discussed some of the points, including that he has a hard time with language and social skills (like standing in line, looking at people), but that he can do things that are hard for them, like reading. Sort of along the lines of the week’s theme of ‘what makes you special’ and that everyone had different strengths and weaknesses.

I now have to wait the weekend to find out how it went. I should have arranged to talk to her after school, but I didn’t. Now I have a knot in the pit of my stomach hoping I made the right decision to talk to her about it, to talk to his classmates about it, and how everybody is going to react to it. It is such an unknown and such a big thing, and I hope I didn’t screw it up.

I plan on posting more later, but I am relieved to report that school went well today. For the first time, he made it the entire day. The last hour was pretty on and off, but we made it.

He even played with the other kids at the kitchen/table/register area when the ST was in the room observing him. I could see very strong influences of ST in his play, but he really looked like he was participating. It was a great time for me to pitch the desire to keep him in a mainstream room with a para. As I watch him, I know he needs visual supports, but I am not sure that he even needs a personal para, just one in the room that can help the teacher manipulate the visual schedule for him. I am finding that I am helping some of the other students as much as I am helping him now. (there are a few high needs kids in that room, more than typical kids) He needs direction on social cues, but he understands the academic work for the most part. That teacher really needs help, the needs are just so many and so diverse, but she is totally amazing

There are a number of kids in the room that don’t know a single letter. The girl who I suspect will end up with an IEP herself was so far off the mark trying to make the letter I it was even surprising for me. I asked the teacher if she had seen Handwriting without Tears, because I could see that being really successful for that little girl (she didn’t have any concept of the imaginary boundries around letters, even more than Zane did when he started out on HWT). She had seen it and wished her budget would allow for it because it was a great program. If I had the money, I would be buying it for the school. It was a specific example of the pathetic funding the schools get in this area.

I also have to go out and buy a few more school supplies. When another little girl had no supplies except an obvious hand me down, beat up, way too big backpack I pulled the ’spring’ supplies (they were to get two of a lot of things, the second set to be pulled out in January) of Zane’s, rubbed his name off the best I could, and gave them to her. I just couldn’t let her sit there watching all the other kids filling up their supply box with her’s empty. She didn’t have a scissors, but at least the crayons and glue sticks spread out made her box not look so different from the other kids. I imagine that most of the time the burden for that rolls to the teacher, and understand a lot better the frustration these teachers face. No human being could watch that happen and not do something about it, but it has to be so frustrating to teachers to have to step in like that all the time when they don’t exactly make big bucks anyway.

The plan was to go to bed earlier last night so that I wouldn’t get sick with all the stress and germs. That didn’t work out so well. Between Zach and my coughing, nobody got good solid sleep. This morning I called my cousin who is here in town and asked if he knew of anybody he could recommend that is on this side of town, and he could. I called and Zach had his appointment around noon, and I have one about 5pm tonight, after Zane’s ST.

Since Zach wasn’t sure he would be up to driving to the Dr, and it was really neccessary, I couldn’t go to school today (and really, really glad I made the decision not to go because I feel a whole lot crappier now than I did when I made the call), so Zane couldn’t go to school. I went quickly from a slightly annoying cough yesterday to a full blown, really painful cough today. Zach has water on his ears, bronchitis, and phareng… no idea how to spell it, but the root word means throat, so I assume it is the latin term for “really sore/irritate/red throat”. He now has antibiotics, which prompted me to just go on in since there is a high chance I have the same thing and have NO desire for ear problems or 6+ days of fever.

In the “good news” department, Dad came home today. Wonderful!

eta: both Zach and I have meds now. I am considered contageous for another 24 hours, so no school tomorrow either.

One good thing, the gym teacher is not the one he had on orientation day, and I like him. Zane actually listened to him well enough to do the go-freeze game. He wasn’t nearly so wordy about it, just showed the kids what to do physically instead of beating it to death with words while the kids sat and listened. Zane still needed quite a bit of guidance to listen through most of the class, but it wasn’t like pulling teeth this time.

He also did a lot better with scissors skills and coloring, and standing in line (that got a little less successful as the day went on, but still better than yesterday) He was able to hold his hands behind his back this time too.

I do like his teacher. She seems like she will be a good match for him.

Zach is still sick, but he woke up with a 100.9 degree fever today instead of the 103+ he has been waking up with, so that is good. I am getting a cough, but so far no fever. Zach didn’t start really coughing until yesterday, so maybe I won’t get what he had and it is just sinus drainage from allergies or something.

Zane did really well in ST tonight, even asking, without prompts, for the ST to “tell me again” when given a 3 step direction. He was able to follow 3 step directions on several trials today, which really gives me a lot of hope for him being able to handle school much better once the visual supports are in place and he is more comfortable. He also added some novel modifiers to scripts. Very cool.

Dad was moved out of the ICU and into a regular room. He is able to sit up to eat and is just generally doing better. Praise be! I am so relieved.

Now, for the rest of life…

Zach is still sick. He is to that point (well, actually beyond the point) of having patience with it and is understandably irritable. The doctor not giving him anything to help with the symptoms didn’t make him very happy either. So far, the Tylenol and Aspirin don’t help at all, only the Ibuprophin is helping reduce his fever, which doesn’t really make any sense, but is true nonetheless. He already had all of his classes but one set up, and the one that isn’t he sent out a memo that he would get the second assignment out later this week since people are still registering and dropping anyway.

Low point of the day: Tonight Zora pinched her finger in the accordion doors in front of the washer/dryer. It bled, she was hysterical and I had a hard time discerning where the blood was coming from for a while until I finally saw her poor little thumb. Most of the pad of her thumb was pinched and it looks like it will make a nasty blood blister. It was scraped pretty bad, but not ER worthy. She wasn’t impressed with the band-aid either. Holding her and trying to comfort her tonight was my breaking point. I cried right along with her as we lay in bed together tonight at bedtime. It hurt and I couldn’t do anything about it. I am getting so familiar with that feeling this week, but at least the grownups have some ability to cope.

I did get a nap today, but I also only got about 4-5 hours of sleep last night. The main living area is somewhat picked up, but I am still having the frustration of everything taking just a little longer than it should because everything isn’t in order like it should be. I was able to finish one load of laundry, I have another waiting in the dryer (It got pushed to the side when Zora got hurt and I am giving Zane a few minutes to fall to sleep before I start messing with it since it is just outside his room, and he doesn’t have a door on his room), and the final load I will do today is in the washer, waiting for the dryer. There is enough clean to get us through a few days at least.

Oh, and on a somewhat funny note, if anybody gets a weird email from Zach, he was sending me a picture of a boombox with a dvd player in the spirit of “look what they did now”, and instead of hitting the email for just Robert and me, he hit several group email buttons, so my whole family, and another group of people are going to get a link to a boombox and be wondering what the heck that is about. lol

Zane starts back at ST at the college this week. The new student clinician called tonight, apologizing for it being last minute. I am actually glad she called tonight because in all likelihood, had she called earlier, there is a good chance I would have forgotten. I told her about the teachers using sign. I know she probably can’t address that this first week back, especially since she is a student and not able to switch gears that fast (it wouldn’t be a picnic for a professional, but they have more ability to switch things around when something like this comes up), but that it would be something important to address with him to help his transition into school. I told her that I had an idea, but hadn’t had time to implement it (make a matching game between PECs that he is familiar with and the signs he needs to learn, maybe also paired with doing the action….I was sort of rambling, I hope she caught the drift of what I meant.) I told her that I hadn’t talked to her ‘boss’ about it, but she might have more concrete ideas, and reiterated that I don’t expect it to be on the agenda tomorrow. She knows Zane from preschool last year, so that is a big bonus. He doesn’t have to learn a new person.

I worked with Zane a bit tonight on ‘hands behind his back’ thing tonight. (and the ASL, but that seemed less successful so far) That is one rule I really like because it is so much clearer than the typical list of what you aren’t supposed to do that we were given as kids. (don’t push, don’t touch, don’t hit, etc.) Instead of kids testing the boundaries of what they can and can’t do (I can see myself as a kid thinking “they didn’t say I couldn’t clap my hands, so it isn’t against the rules), they gave one clear rule…hands behind your back keeps a LOT of other options off the table. It might take just a bit of practice for Zane to be able to walk without veering over with his hands back there, but I think he can get it (and if he can’t, we will make a viable alternative, but I think he can handle the motor planning involved for that in short order)

Well, Zane is probably asleep now, so I will close, switch around the laundry, and relax a bit.

Zane's age

Zane is 16 years, 4 months, and 28 days old

Zora's age

Zora is 12 years, 5 months, and 1 day old

Random Quote

Autism is a continuum from genius to extremely handicapped. If you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians. Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire. The problem is, you talk to parents with a low-functioning kid, who’ve got a teenager who still goes to the bathroom in his pants and who’s biting himself all the time. This guy destroys the house, and he’s not typing, no matter what keyboards you make available. His life is miserable. It would be nice if you could prevent the most severe forms of nonverbal autism.”— Temple Grandin, PhD, Autistic